Ethical, Legal and Social Issues of Digital Phenotyping as a Future Solution for Present-Day Challenges: A Scoping Review.
Ontology highlight
ABSTRACT:
SUBMITTER: Tomicic A
PROVIDER: S-EPMC8686352 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackgroundNeurological disorders are the leading cause of disability and the second leading cause of death worldwide. Teleneurology (TN) allows neurology to be applied when the doctor and patient are not present in the same place, and sometimes not at the same time. In February 2021, the Spanish Ministry of Health requested a health technology assessment report on the implementation of TN as a complement to face-to-face neurological care.MethodsA scoping review was conducted to answer the question on the ethical, legal, social, organisational, patient (ELSI) and environmental impact of TN. The assessment of these aspects was carried out by adapting the EUnetHTA Core Model 3.0 framework, the criteria established by the Spanish Network of Health Technology Assessment Agencies and the analysis criteria of the European Validate (VALues In Doing Assessments of healthcare TEchnologies) project. Key stakeholders were invited to discuss their concerns about TN in an online meeting. Subsequently, the following electronic databases were consulted from 2016 to 10 June 2021: MEDLINE and EMBASE.Results79 studies met the inclusion criteria. This scoping review includes 37 studies related to acceptability and equity, 15 studies developed during COVID and 1 study on environmental aspects. Overall, the reported results reaffirm the necessary complementarity of TN with the usual face-to-face care.ConclusionsThis need for complementarity relates to factors such as acceptability, feasibility, risk of dehumanisation and aspects related to privacy and the confidentiality of sensitive data.
| S-EPMC9962592 | biostudies-literature
Project description:Background: Rapid advancements in research and development related to nanomedical technology raise various ethical and legal challenges in areas relevant to disease detection, diagnosis, and treatment. This study aims to outline the existing literature, covering issues associated with emerging nanomedicine and related clinical research, and identify implications for the responsible advancement and integration of nanomedicine and nanomedical technology throughout medical networks in the future. Methods: A scoping review, designed to cover scientific, ethical, and legal literature associated with nanomedical technology, was conducted, generating and analyzing 27 peer-reviewed articles published between 2007-2020. Results: Results indicate that articles referencing ethical and legal issues related to nanomedical technology were concerned with six key areas: 1) harm exposure and potential risks to health, 2) consent to nano-research, 3) privacy, 4) access to nanomedical technology and potential nanomedical therapies, 5) classification of nanomedical products in relation to the research and development of nanomedical technology, and 6) the precautionary principle as it relates to the research and development of nanomedical technology. Conclusion: This review of the literature suggests that few practical solutions are comprehensive enough to allay the ethical and legal concerns surrounding research and development in fields related to nanomedical technology, especially as it continues to evolve and contribute to future innovations in medicine. It is also clearly apparent that a more coordinated approach is required to ensure global standards of practice governing the study and development of nanomedical technology, especially as discussions surrounding the regulation of nanomedical research throughout the literature are mainly confined to systems of governance in the United States.
| S-EPMC10213273 | biostudies-literature
Project description:Digital Pathology (DP) is a platform which has the potential to develop a truly integrated and global pathology community. The generation of DP data at scale creates novel challenges for the histopathology community in managing, processing, and governing the use of these data. The current understanding of, and confidence in, the legal and ethical aspects of DP by pathologists is unknown. We developed an electronic survey (e-survey), comprising 22 questions, with input from the Royal College of Pathologists (RCPath) Digital Pathology Working Group. The e-survey was circulated via e-mail and social media (Twitter) through the RCPath Digital Pathology Working Group network, RCPath Trainee Committee network, the Pathology image data Lake for Analytics, Knowledge and Education (PathLAKE) digital pathology consortium, National Pathology Imaging Co-operative (NPIC), local contacts, and to the membership of both The Pathological Society of Great Britain and Ireland and the British Division of the International Academy of Pathology (BDIAP). Between 14 July 2020 and 6 September 2020, we collected 198 responses representing a cross section of histopathologists, including individuals with experience of DP research. We ascertained that, in the UK, DP is being used for diagnosis, research, and teaching, and that the platform is enabling data sharing. Our survey demonstrated that there is often a lack of confidence and understanding of the key issues of consent, legislation, and ethical guidelines. Of 198 respondents, 82 (41%) did not know when the use of digital scanned slide images would fall under the relevant legislation and 93 (47%) were 'Not confident at all' in their interpretation of consent for scanned slide images in research. With increasing uptake of DP, a working knowledge of these areas is essential but histopathologists often express a lack of confidence in these topics. The need for specific training in these areas is highlighted by the findings of this study.
| S-EPMC8822384 | biostudies-literature
Project description:This chapter will map the ethical and legal challenges posed by artificial intelligence (AI) in healthcare and suggest directions for resolving them. Section 1 will briefly clarify what AI is and Section 2 will give an idea of the trends and strategies in the United States (US) and Europe, thereby tailoring the discussion to the ethical and legal debate of AI-driven healthcare. This will be followed in Section 3 by a discussion of four primary ethical challenges, namely, (1) informed consent to use, (2) safety and transparency, (3) algorithmic fairness and biases, and (4) data privacy. Section 4 will then analyze five legal challenges in the US and Europe: (1) safety and effectiveness, (2) liability, (3) data protection and privacy, (4) cybersecurity, and (5) intellectual property law. Finally, Section 5 will summarize the major conclusions and especially emphasize the importance of building an AI-driven healthcare system that is successful and promotes trust and the motto Health AIs for All of Us.
| S-EPMC7332220 | biostudies-literature
Project description:While emerging digital health technologies offer researchers new avenues to collect real-time data, little is known about current ethical dimensions, considerations, and challenges that are associated with conducting digital data collection in research with minors. As such, this paper reports the findings of a scoping review which explored existing literature to canvass current ethical issues that arise when using digital data collection in research with minors. Scholarly literature was searched using electronic academic databases for articles that provided explicit ethical analysis or presented empirical research that directly addressed ethical issues related to digital data collection used in research with minors. After screening 1,156 titles and abstracts, and reviewing 73 full-text articles, 20 articles were included in this review. Themes which emerged across the reviewed literature included: consent, data handling, minors' data rights, observing behaviors that may result in risk of harm to participants or others, private versus public conceptualizations of data generated through social media, and gatekeeping. Our findings indicate a degree of uncertainty which invariably exists with regards to the ethics of research that involves minors and digital technology. The reviewed literature suggests that this uncertainty can often lead to the preclusion of minors from otherwise important lines of research inquiry. While uncertainty warrants ethical consideration, increased ethical scrutiny and restricting the conduct of such research raises its own ethical challenges. We conclude by discussing and recommending the ethical merits of co-producing ethical practice between researchers and minors as a mechanism to proceed with such research while addressing concerns around uncertainty.
| S-EPMC7451523 | biostudies-literature
Project description:BackgroundUnderstanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy.MethodsWe examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1% response rate) followed by a follow-up survey (62.5% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust.ResultsThe majority (59.6%) preferred one-time consent, 30.3% desired a tiered consent approach that provides multiple options, and 10.1% preferred re-consent for future research. When asked different questions on re-consent, most (58%) reported that re-consent was a waste of time and money, but 51.7% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2%) stated that the research institution owns the samples whereas 19.4% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies.ConclusionsMany cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.
| S-EPMC3599691 | biostudies-literature
Project description:BACKGROUND:Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. METHODS:We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. RESULTS:We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18?second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. CONCLUSIONS:We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.
| S-EPMC7216517 | biostudies-literature
Project description:For the past several years, the implementation of pharmacogenetic (PGx) testing has become widespread in several centers and clinical practice settings. PGx testing may be ordered at the point-of-care when treatment is needed or in advance of treatment for future use. The potential benefits of PGx testing are not limited to adult patients, as children are increasingly using medications more often and at earlier ages. This review provides some background on the use of PGx testing in children as well as mothers (prenatally and post-natally) and discusses the challenges, benefits, and the ethical, legal, and social implications of providing PGx testing to children.
| S-EPMC6800463 | biostudies-literature
Project description:Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining confidentiality, and paucity of treatments for diseases where natural history information may be limited). More than other areas of research, potential barriers include the lack of funding opportunities and appropriate review processes for applications to funding agencies. The ELSI Working Group of the International Rare Diseases Research Consortium (IRDiRC) performed an informal survey on ELSI funding initiatives to learn more about different funding mechanisms and to identify potential gaps in funding opportunities. The Working Group discusses these challenges and highlights the role of funding agencies and partners such as patient advocacy groups, specialists in social sciences and humanities, and clinicians to advance ELSI research in rare diseases.
| S-EPMC6974597 | biostudies-literature
Project description:An increasing number of health products and services are being offered on a direct-to-consumer (DTC) basis. To date, however, scholarship on DTC healthcare products and services has largely proceeded in a domain-specific fashion, with discussions of relevant ethical challenges occurring within specific medical specialties. The present study therefore aimed to provide a scoping review of ethical issues raised in the academic literature across types of DTC healthcare products and services. A systematic search for relevant publications between 2011-2021 was conducted on PubMed and Google Scholar using iteratively developed search terms. The final sample included 86 publications that discussed ethical issues related to DTC healthcare products and services. All publications were coded for ethical issues mentioned, primary DTC product or service discussed, type of study, year of publication, and geographical context. We found that the types of DTC healthcare products and services mentioned in our sample spanned six categories: neurotechnology (34%), testing (20%), in-person services (17%), digital health tools (14%), telemedicine (13%), and physical interventions (2%). Ethical arguments in favor of DTC healthcare included improved access (e.g., financial, geographical; 31%), increased autonomy (29%), and enhanced convenience (16%). Commonly raised ethical concerns included insufficient regulation (72%), questionable efficacy and quality (70%), safety and physical harms (66%), misleading advertising claims (56%), and privacy (34%). Other frequently occurring ethical concerns pertained to financial costs, targeting vulnerable groups, informed consent, and potential burdens on healthcare providers, the healthcare system, and society. Our findings offer insights into the cross-cutting ethical issues associated with DTC healthcare and underscore the need for increased interdisciplinary communication to address the challenges they raise.
| S-EPMC10863864 | biostudies-literature